Inclusive research: An Irish perspective

Abstract

Accessible Summary We talked to 14 people about what it is like to do inclusive research in the Republic of Ireland. People said that more time is needed to do inclusive research well. They also told us about how hard it can be for all members of the research team to be equally involved in all research stages. Learning to speak up for themselves was something people with learning disabilities said they liked about being an inclusive researcher. Inclusive research teams need to write more about how they work on projects together, to give others ideas about how to do good research that matters to people with learning disabilities. AbstractBackgroundThe United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) (United Nations, ) sets the expectation that people with disabilities be involved in research that affects their lives. Inclusive research moves people with intellectual disabilities away from being research subjects, towards power‐balanced research collaborations that can create individual and societal change.MethodThis study employed a qualitative methodology guided by critical disability theory. Participants included seven adults with intellectual disability, two supporters and five academics who all had experience of inclusive research. Semistructured individual interviews (n = 9) and one focus group (n = 5) were carried out to explore experiences of engaging in inclusive research in the Republic of Ireland.ResultsThematic analysis using Atlas.ti software yielded three themes: “Continuum of inclusive research,” “Value of inclusive research” and “Power relations within inclusive research.” Definitions of inclusive research occurred along a continuum from participatory to emancipatory. Advocating for policy change and personal growth motivated participants to become inclusive researchers. The power dynamics negotiated by teams functioning within academic environments were highlighted, yet despite this, inclusive research teams are creating a space where people with intellectual disabilities are becoming confident researchers and peer mentors.ConclusionsThis study illuminated experiences of engaging in inclusive research in an Irish context. Retaining a responsive, local approach to inclusive research is advised. Being part of inclusive research teams was both personally rewarding and financially complex. Inclusive research is at a critical moment in Ireland, poised to effect positive change in policy and service provision. Critically reviewing and documenting how inclusive research teams negotiate these complex dynamics is warranted.